Medical Marijuana

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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NatWest
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Re: Medical Marijuana

Post by NatWest »

Hi Steve, Hopefully my reply to Pinkynose provided you with some of the info you are requesting. I have not yet shopped for any edibles, or really asked any questions about them. I will say that in my experimenting I have found that the absolute most effective MM, for me, so far, is the vapor pen cartridge made by the CO2 Company, labled CBD Critical Mass with THC 22.4% and CBD 39.8%. It works better than the Cannatonic I recently tried, or anything else. It quite literally makes the symptoms disappear almost instantaneously. I had used it all up, and went for a couple of days without it, and discovered that the other things did not work on their own. For me. I know it can be different for everyone. Good luck to you.

Rustsmith
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Re: Medical Marijuana

Post by Rustsmith »

pinkynose, what can you tell us about your MM experience? Were you able to try the edibles approach? What sort of THC/CBD products did you get to try?

I leave for a similar trip on Monday.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

pinkynose
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Re: Medical Marijuana

Post by pinkynose »

Hi Rustsmith. I just sent you a PM. I am sorry I did not your post until today. I did not have access to a computer on my trip and just returned. carol

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corynski
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Re: Medical Marijuana

Post by corynski »

Greetings......

I'll follow along on this thread if I may, as I'm interested in the use of cannabis for RLS symptoms. Years back I discovered I had RLS but I was using cannabis then and the symptoms would disappear whenever I smoked. Once diagnosed I started using Pramipexole (Mirapex) which worked very well for me, a truly sanity saving medicine, but I've steadily increased my dosage over time, going from 0.25 mg up to 1.0 mg, a 300 % increase over 20 years. And now my symptoms are returning and I wish to avoid that.

Are there any studies done regarding RLS and cannabis? Let me know if there is some research I could read.

peace

charley, 77, Lancing, Tn.
"The real, the deepest, the sole theme of the world and of history, to which all other themes are subordinate, remains the conflict of belief and unbelief." -- Johann Wolfgang Goethe

ViewsAskew
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Re: Medical Marijuana

Post by ViewsAskew »

Charley - please look into augmentation - what you are describing with pramipexole is likely augmentation.

There just isn't much research about cannabis at all. None about RLS/WED that I know of. Lots of anecdotal reports, such as your own. It definitely seems that the type you use may be very important.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

NatWest
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Re: Medical Marijuana

Post by NatWest »

Hi Charley,

My experience has been similar to yours, I started having symptoms about 10 years ago, got a prescription for Requip in 2008, then switched to Mirapex about 4 years ago. In both cases had to keep increasing my dosage, and with both medications, augmentation eventually took over. Then last summer I saw a CNN special series on cannabis with Dr. Sanjay Gupta. It focused mostly on young children who were suffering from seizures, and a special formulation called Charlotte's Web that was treating them successfully, so that got me thinking about it. The series may be available On Demand, it was called Weed 1, 2, and 3. This is the only testing/study I'm aware of that seemed focused on conditions similar to RLS.

I've attended nearly all of the webinars sponsored by the RLS Foundation but have never heard it mentioned. One webinar originated from the University of Colorado Denver Medical Center, and I had hoped it would be mentioned, since I knew it was legal there, but it wasn't. I submitted a question asking if there were any plans to do a study with MM, but did not receive an answer. So just decided to experiment on my own. In filling out the forms to submit to the state last February, I saw that RLS was listed as a qualifying condition, along with Parkinson's Disease, eiplepsy, and other forms of seizures and unspecified neuropathies, for which Requip and Mirapex are sometimes prescribed.

Another member gave me the name of a book, Cannabis Pharmacy, by Michael Backes, which I found very informative, although I don't recall if it specifically mentioned RLS.

I've been using MM for nearly 7 months now. As you said, it makes the symptoms disappear. I would love to hear about any studies that have been done, and any specific formulations that are especially effective in treating RLS. I am happy to have found it, and thankful for the relief it's brought me. Just want to know more.

Peggy

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corynski
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Re: Medical Marijuana

Post by corynski »

Thanks Peggy and ViewsAskew

I did a little more research and found a reference to cannabis use for RLS in the publication International Association for Cannabinoid Medicines, from Europe I believe...... http://www.cannabis-med.org/index.php?t ... =21&lng=en

At the very bottom of the page under Miscellaneous Uses it is listed.....

IACM is an excellent journal to keep up with research in the rest of the world, especially in Israel. It astounds me that the DEA can still call cannabis a 'Schedule 1' drug, as the definition of Schedule 1 drug says specifically "substances that have no medicinal value'. Well, that is obviously wrong, hopefully they will update their laws........ And thanks for the references, I have seen Sanjay Gupta's videos, and will look into the book Cannabis Pharmacy. Sativex is a cannabis medicine from England by the GW Pharmaceuticals Co. and that may work too. Perhaps someone from England or Canada could tell us.......

peace

charley
"The real, the deepest, the sole theme of the world and of history, to which all other themes are subordinate, remains the conflict of belief and unbelief." -- Johann Wolfgang Goethe

NatWest
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Re: Medical Marijuana

Post by NatWest »

Hi Charley,

Thanks for the article! I agree that it would be nice if doctors and scientists in this country were doing more research on this subject, but it's kind of like trying to discuss stem cell research with an orthopedic surgeon ..... they don't really want to hear about it. I'm going to ask about Sativex the next time I go to the dispensary, probably tomorrow or Sunday. It was written about quite extensively in Cannabis Pharmacy.

pinkynose
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Re: Medical Marijuana

Post by pinkynose »

Bess wrote:Boy did I get the opportunity to put this to the test! Last night was the worst RLS I've had in a long while, by 2AM my legs were climbing up the walls. Valium didn't work, nyquil didn't work, magnesium didn't work... I finally downed four dropperfuls (equating to possibly 50 mg of CBD) of the oil within the span of an hour... I think maaaayyyybe it calmed the legs a little? I think it's too low a dosage to know though. Also my insomnia was so severe I ended up just getting up and going to lab to get some work done so that complicates things a bit too. Based on what you've told me NatWest, I'll give the vape pen thing another go.


Hi Bess. I know you wrote this last month, but I just tried CBD oil this week. Mine only has 22.5mg CBD per serving but it also has 2mg of THC. It is legal in my state to include THC as long as it's less then 3%. I take it only in the morning when i wake on an empty stomach and it doesn't seem to do much for my symptoms, but it does make me more alert which is a huge help. If I took it at night it would keep me up but that could be the THC. I've heard that CBD needs some THC to activate. Do you or anyone else have any information on that?

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corynski
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Re: Medical Marijuana

Post by corynski »

Hi NatWest

GW Pharmaceuticals is quite big in England, a well funded company with extensive greenhouses and production facilities. They emphasized from the beginning that their Sativex was a whole-cannabis plant medication, and not a partial like Marinol. I've not looked for results of using Sativex, and for what it is prescribed.

Hello Pinkynose

We're all so different. Folks say Neurontin works so well for them, but it drove me up the walls with visions, audio hallucinations, and then I couldn't drive at night and finally I couldn't drive at all and lost my confidence. Very strange, but on the other hand I think it is the THC that calms my restless legs and I'm right to sleep. . Lately the RLS comes on earlier in the evening and I'm at 1mg Mirapex now, so I guess I'll try a little more, up to 1 and 1/2 mg. I would like to try the CBD to see if that is any different for me.

But to not let RLS and Neuropathy sufferers have a medicine that's known to work and likely been used for thousands of years for such problems sounds like pure arrogance to me. Or ignorance. What a disgrace.....

And now I've got my feathers all up over a California Court case that concluded it "could not say that Congress could not reasonably have decided that marijuana belongs and continues to belong on Schedule 1 of the CSA." What?? For her information I can assure her that Schedule 1 is an absolute lie, that cannabis is absolutely medicine, and she must have a conflict of interest somewhere to accept that as truth.

I digress.....

Peace

charley
"The real, the deepest, the sole theme of the world and of history, to which all other themes are subordinate, remains the conflict of belief and unbelief." -- Johann Wolfgang Goethe

NatWest
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Re: Medical Marijuana

Post by NatWest »

Hi pinkynose,

Most of the formulations I've tried have some THC in them, the Cannatonic tincture contains 6.94 mg THC to 9.20 mg CBD, my vapor pen cartridge is 22.4% THC and 39.8% CBD, and they have not kept me awake. I take them right before I go to bed, and am sound asleep within 10 to 15 minutes. I take another dose around 1:00 or 2:00 am if symptoms occur. I do think the THC may be helpful for me because I find it very relaxing. But, I've also recently (within the last 2 weeks) tried CBD Agave Stix, which are 100% CBD, and found them to be quite effective if middle of the night symptoms occur. I'm thinking that both THC and CBD work on rls, the key would be not consuming so much THC that you hallucinate--that could keep you awake. I visited the dispensary yesterday and bought some edibles, each containing 52.97 mg THC and .17 mg CBD. I ate 1/2 of one a couple of hours before going to bed, and slept very well.

NatWest
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Re: Medical Marijuana

Post by NatWest »

Hi Charley,

I agree with everything you said!

I asked about Sativex yesterday when I went to the dispensary. They didn't have it available. I may look up other dispensaries in the area to see if any of them have it.

Rustsmith
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Re: Medical Marijuana

Post by Rustsmith »

I am not quite finished with my week long MM evaluation, but since everyone else is discussion their experiences, this is a good time for me to get started.

During the past year I have averaged between 4 and 4.5 hrs of sleep and never more than 6. I am currently on the Neupro patch and take 1200mg of gabapentin each evening to help me fall asleep. The gabapentin allows me to fall asleep, but I always end up waking at 2 to 3A with no hope of going back to sleep until mid-morning. I have tried all of the currently available prescription sleep aids (including one that cost about $100/night) and none of them worked.

Four days ago I tried edible MM in the form of dark chocolates. If I am correctly deciphering the label each 10mg chocolate contains 80/20 THC/CBD. The first 3 nights I slept from 7 to 8.5 hrs, something that I cannot remember doing for years. And I woke each morning refreshed. It is also important to note that just before taking the first dose, I was starting to have a pre-RLS symptom where the muscles in my legs tense, almost to the point of cramping. As soon as I took the MM, my legs relaxed and there were no more warning signs of full blown RLS.

So last night I tried cutting my gabapentin dose in half. I slept for 5.25 hrs, but it was a broken sleep with regular awakenings, so I will go back to the full dose of gabapentin. Tonight's experiment calls for cutting my Neupro dose from 4mg to 3mg. This should be interesting since I know that I am starting to augment at 4mg.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

pinkynose
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Joined: Sat Apr 25, 2015 10:58 pm

Re: Medical Marijuana

Post by pinkynose »

Rustsmith wrote:I am not quite finished with my week long MM evaluation, but since everyone else is discussion their experiences, this is a good time for me to get started.

During the past year I have averaged between 4 and 4.5 hrs of sleep and never more than 6. I am currently on the Neupro patch and take 1200mg of gabapentin each evening to help me fall asleep. The gabapentin allows me to fall asleep, but I always end up waking at 2 to 3A with no hope of going back to sleep until mid-morning. I have tried all of the currently available prescription sleep aids (including one that cost about $100/night) and none of them worked.

Four days ago I tried edible MM in the form of dark chocolates. If I am correctly deciphering the label each 10mg chocolate contains 80/20 THC/CBD. The first 3 nights I slept from 7 to 8.5 hrs, something that I cannot remember doing for years. And I woke each morning refreshed. It is also important to note that just before taking the first dose, I was starting to have a pre-RLS symptom where the muscles in my legs tense, almost to the point of cramping. As soon as I took the MM, my legs relaxed and there were no more warning signs of full blown RLS.

So last night I tried cutting my gabapentin dose in half. I slept for 5.25 hrs, but it was a broken sleep with regular awakenings, so I will go back to the full dose of gabapentin. Tonight's experiment calls for cutting my Neupro dose from 4mg to 3mg. This should be interesting since I know that I am starting to augment at 4mg.


Hi. Glad to hear you're getting some sleep! What I found out about edibles from my trip is if the package says 80mg THC it is divided by the number of chocolates in the package. So if there were 4 pieces each would have 20mg. To me an 80mg serving of THC would be quite alot. Then again, you know I am a novice at this so I could be wrong.

I just spoke to a friend of mine today who is a chemist about weaning off Gabapentin. I had tried doing what you did with the exact same results. I halved my dosage and got broken sleep with regular awakenings! She said I had to wean much more slowly. That's difficult with high dosage capsules. I hope this helps.

Rustsmith
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Re: Medical Marijuana

Post by Rustsmith »

Thanks. My 100mg card of chocolates had 10 pieces where the label stated that each was 10mg of THC. However, the label on the back appears to indicate that the 10mg THC on the label is actually the sum of all the cannibinoids present in each piece.

As for reducing the gabapentin, I knew that it would be a challenge for the MM, but wanted to see how it would handle the challenge since nothing else helped my sleep. I have to say that I was presently surprised at how well it did. I take gabapentin for dual proposes. Not only does it help with the insomnia side of my RLS, but it is also the most effective medication that I have found for preventing my migraines. The sleep is one thing but I would never be willing to give it up as long as it continues to keep my migraines in check. RLS may be bad, but a full blown migraine is inhuman torture.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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